The Institute of Medicine, an American group, wants to rename CFS/ME and have declared it to be a real illness, a disease that needs serious attention. Perhaps the most astounding thing is that there actually was a need for them to declare that patients need to be believed and not told that it is all in their heads. The Americans are a bit late to the party, with Canada, Australia and the UK having done studies and complied reports some time ago, so to have American authorities suddenly declaring this a real and legitimate thing can be somewhat annoying but I will look past that and focus on the good news. The US is big, loud and has money. Does anybody know that better than Canada, their neighbour and cousin? Now that American doctors are being urged to recognise, diagnose and support people with CFS/ME perhaps soon to be known as SEID (Systemic Exertion Intolerance Disease), perhaps now money will be put towards studying it and finding the cause and some day a cure. At this point, if like me you are lucky enough to have knowledgeable doctors who can at least diagnose it and know it is not a psychological condition, you may or may not have experimented with various potential treatments.
There is disagreement amongst the experts, and there are too few experts in the illness, as to what treatments work best and desperate patients are at risk of at best spending money on treatments that may work for a short period of time and then stop working, or of finding some treatments that address some of the symptoms some of the time. Although their numbers are diminishing, there are still some who condone the idea of graded exercise as a treatment but it comes with great risks. The very nature of the illness is that exertion of any kind, physical, cognitive or emotional, puts too much stress on the body. More than it does to a person who does not have the disease. One of the defining symptoms is that the person with the disease is no longer able to perform physical tasks that were once easy. The person with the disease is not able to perform tasks without experiencing profound exhaustion that is not relieved by rest.
Having lived with this disease for most of my life, I know that graded exercise does not work. When I am in a remission stage I can perform physically, and I can even push myself to do things such as take up a vigorous sport and my ability may last a few months or even a few years if I am not pushing too hard. Then I will crash. I have yet to meet any exercise therapist who understands the limits and even as the afflicted person it can be very difficult to know where your own limits are. What you can do today and tomorrow you may or may not be able to do next week. Exercise professionals all want to take you to the next level. Oh you can do a walk around the block comfortably now, okay you will now go round the block twice. This is what graded exercise is, steadily doing more. This is how you train a normal, healthy person to get fit. This is not what you do with someone who has CFS/ME or SEID as we may eventually be calling it. At some point this graded exercise will only result in a relapse unless the patient finds the point at which he/she is not being overtaxed and can maintain the activity level. A maintained activity level is not graded exercise. I have been trying to find my maintainable level for the past thirty years. I do not yet know what it is. I have so far, been wrong every time.
There are the vitamin pushers, the special diet enthusiasts, the oil pulling, alkaline water drinking, acupuncture enthusiasts who believe these will cure all diseases and I have had them all urged on me by well meaning people. I have people praying to their god or goddess for me and encountered people who say to me, 'Oh yeah, I am really tired too. It must be nice not to have to work.' If I really want to, I can find people on the internet who think I would be cured if someone just made me toughen up and stop whining. Sadly, that is not the case and if not for my culture, time period and family, I would not be here. I would not have survived life, not being among the fittest. There is much I can be thankful for, despite my not believing there is a deity to thank. Tonight I am mostly thankful that our big, loud, wealthy cousin to the south is finally getting onto this illness. It's time for consistent diagnoses, treatment, and just plain understanding and acceptance of the disease. It's bad enough living with it. There is no longer any excuse for patients to be told it is all in their heads and have to deal with disbelief from family, friends, co-workers and the medical community. Nobody who knows me can watch me and not know that my illness is real, but I am fortunate and grateful to have had medical support all along too. Everyone with this illness should be so fortunate.
There are news reports all over the internet at this point. Here are a few links.
Excerpts from this site- http://america.aljazeera.com/articles/2015/2/10/institute-of-medicine--calls-for-renaming-chronic-fatigue-syndrome.html -had me nodding my head.
...Most people with ME/CFS suffer from extreme exhaustion, made worse by
even mild physical or mental effort. After a crash, known as
postexertional malaise, recovery may take days or weeks, and sleep
brings no relief. These symptoms are recognized as key defining
characteristics of the disease, according to the new criteria. Problems
with speaking, thinking and remembering, known as cognitive impairments,
are also widespread among patients.
Some sufferers have good days and bad days; others are confined to
bed for months or years. Many people with the disease experience severe
headaches, muscle pain and sensitivity to light and noise.
“It really is a hidden illness,” said Troph. “A tricky point is that
people tend to see you when you're feeling your best. When you're
feeling crummy, you're hopefully home in bed.”...
And this bit succinctly states what my first reaction was when my dad called me to tell me of the news report on the committee findings.
...In a 2013 open letter
to Kathleen Sebelius, the secretary of health and human services at the
time, dozens of experts signed a letter stating that groups like the
IOM “lack the needed expertise to develop ‘clinical diagnostic criteria’
for ME/CFS,” adding that “this effort is unnecessary and would waste
scarce taxpayer funds that would be much better directed toward funding
research on this disease.” They argued that a set of criteria known as
the Canadian consensus criteria already give an accurate description of
Still, as I said at the beginning of this post, if the US is going to start making noise about this disease and that leads to better understanding, funding for treatments and perhaps some day a cure, then I won't complain too much about the IOM being a bit late to the party. A little bit. Maybe even twice. But mostly I am hopeful. When you live with CFS/ME you have to be.